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"You must be very angry."
This was the (rather leading) question of one of the
journalists I spoke during my brief tenure of being a spokesperson for the
Health Council of Canada. We'd been discussing the eight months I waited for
funding approval for Enbrel, of how the RA ate my life and made me more
disabled, to the point that I never regained the ability I had before the
flare. And likely never will. The reporter seemed to very much want me to be
angry, to hold forth with a blistering indictment of the system, to grieve the
loss still.
And I'm not, I didn’t and I don't. I think I may even have
looked a little puzzled at them before I answered. Because seven years ago, I
thought I was going to die. At this time seven years ago, I thought it might
very well be my last Christmas. And seven years ago, I was absorbing everything
I could, mentally recording and honouring my life and the people in it because
I had begun to say goodbye to the world.
I didn't die…

Coming up for air after a weekend of immersion in the Christmas spirit is an oddly disconcerting experience. It's back to work and I'd much rather stay within the warmth and joy of what in Danish is called Julehygge. In other words, hygge specific to Jul (Christmas). It's a good place to be. The Boy and I started early on Friday (aka Lille Juleaften - Little Christmas Eve) and went to the Distillery District to see the giant Christmas tree. walking through the narrow alleys, around the old buildings and rattling across uneven cobblestones made it feel much more authentic, almost Danish.

Saturday morning, we opened a few presents and gave Lucy some tissue paper. She is very, very fond of tissue paper.

In the evening, we all congregated at my mother's for an evening filled with wonderful food, companionship and everything else that makes for a perfect Christmas. This year, it included a visit from a very small vampire. No, not really, this photo was taken during an extende…

48 hours after our last weekend together, The Boy came down
with the plague. Okay, so maybe it wasn't bubonic, but it certainly was a
particularly pestilential case of the flu. The Boy rarely gets sick – he’s one
of those annoying people with an iron constitution – and when he
does get sick, it's usually short-lived and mild. This one wasn't. This one
absolutely flattened him. How I managed to avoid catching this is beyond me. He and I
get pretty friendly when we're together and yet somehow, he's the one who sank
into a soup of misery and germs while I motored on with my life. I'm sure you
can imagine the frantic knocking on wood that's going on as I'm writing this.
My neighbours might start suspecting an infestation of woodpeckers. By the time The Boy comes back into my general vicinity this
Friday, it'll have been close to three weeks since we've seen each other.
Because I have a suppressed immune system and that means staying far, far away
from …

"You assume that it's all covered." It was at the tail end of my interview with the CBC
- no, not shameless name dropping, actually relevant to this post. (shameless self-promotional links to two
of last week’s interviews at the end of this post). I was chatting with the
reporter and cameraman as the equipment was being put back in their respective bags.
The discussion was about the ripples of chronic illness and disability, how it
goes beyond just medication costs and into things like adaptive equipment and
tools, wheelchair repair and automatic door opener repair. And there is that assumption that it's all covered, at least
up here in Canada,
land of universal healthcare. Or that it's cheaper, somehow. That people who
have health challenges don't have to add financial challenges to their lives,
too. Because that's not fair and we like to think ourselves as a fair country.
Come to think of it, most of the Western, industrialized nations also like to
think …

On Monday, in the Health Council of Canada video I talked about the consequences of not being able to get the medication you need because of cost. Yesterday, I posted my guest blog for the Help Council of Canada about the cost of chronic illness. Today, I'd like to shares something I posted back in the beginning of The Seated View. This piece is about what can happen before and after getting the medication you need and the importance of timely access to financial assistance:

In December of 2004, I looked into the abyss and the abyss looked back. It’s
hard to write about this – doing so with any emotional truth means
going back to a place I’d rather never feel again – but there’s
something I’ve wanted to say for a long time and it needs a bit of a
back story. Pain is an oddly isolating thing. It can’t be shared with other people, can’t be described in any way that comes close to communicating what it feels like. It
isolates geographically and socially – it hurts too much to go …

This week, I'm one of the spokespeople for the Health Council of Canada in relation to the release of their latest report on how Canadians with chronic diseases rate their health care system. Today, my guest blog appears on their blog site. I wrote about the cost of chronic illness:
When we talk about the cost of living with a chronic
illness, it usually refers to the impact on quality of life - the ability to
participate in your family, community and work.
Living with a chronic illness is also expensive.
I am lucky there's a financial assistance program that
covers the very expensive medication which has given me back so much of my
life. Because of this I can work part-time, give back to my community and be
there for my family.
Even so, other medical conditions pop up, as do side effects
from the drug that gave me back my life. More medications are needed, some only
covered in generic form and others not at all. Sometimes, the generic don't
work as well as the brand name.…

Today, the Health Council of Canada releases their latest
report called “How Do Sicker Canadians with Chronic Disease Rate the Health
Care System?” This is not the first report they have released - their mission is
to "[t]o report on the renewal of Canada's
health system, focusing on best practices and innovation." I love this
country.
Anyway, a couple weeks ago, I was contacted by someone I
know at The Arthritis Society wanted to pass my name along to the Health
Council. The Council was looking for spokespeople to put a human face on the
facts of the report and before you knew it, I was at their offices in front of
a camera. Looking only slightly like a deer in the headlights...
Normally, I prefer being behind the camera, but this is
important enough that I got over my stage fright and went for it. However, not
before I turned the tables and took a picture of the other side of the room.
Meet Cameraman Michael Strange, Media Specialist Terry Glecoff and Senior
Policy An…

As you've no doubt noticed, I've been pretty angry lately.
It happens when I'm very tuned into political issues. And it happens a lot when
I'm tuned into political issues that relate to vulnerable populations (usually
double levels of injustice). Lately, I've been blogging a lot about disability
issues and well… This is one of those issues where the political is very
personal. I was starting to consider focusing on unicorns and rainbows, but
then Saturday happened and I got all energized again.
To the best of my knowledge, today is the day that Toronto
City Council will debate eliminating the Hardship Fund. Somewhat ironically,
this happens mere days after the International Day of People with Disabilities
and just one day before Human Rights Day. Because nothing says we support human
rights and services for people with disabilities like axing the fund that helps
people with disabilities get the kind of equipment they need, but can't afford
and which isn't …

Saturday was the International Day of People with Disabilities. This is a day proclaimed by the UN and this year, the theme was "together for a better world for all:including persons with disabilities in development." this became particularly amusing (but not in a good way) when you consider everything that's happened in our fair city recently. The City cancelled its participation in marking this day and on Wednesday, Council will consider axing the Hardship Fund. All very inclusive, don't you think?
Anyway, the community partners decided to go ahead with a celebration of the International Day and announced that the gathering would be between 12:30-2PM. At the last minute, community pressure and the valiant efforts of Dave from Rolling Around in my Head brought the City back into the celebration. They wanted to move it indoors to the Member's Lounge in the Council Chamber, but the community members had concerns about the logistics of this - it was simply too lat…

November was Alzheimer's Awareness Month, as well as National Caregivers Month in the US and HealthCentral marked it by doing a special project where writers from different sides wrote about dementia and Alzheimer's. Earlier this month, I wrote about dementia caregivers' increased risk of developing autoimmune diseases and this week, I take a more personal view of supporting people living with dementia and their caregivers even though your body doesn't allow you to do anything physical:
"For three years, we watched my father disappear, moving a little bit
further away from us every day. He'd had a large stroke and managed to
battle back from that, but then came another. And another and another,
small TIAs and seizures happening often enough that the brain damage
continued, giving him vascular dementia. It wreaked havoc on his mind and body and devastated our family."
You can read the rest of the post here.

Yes, they do. Today, in fact. I don't know how they went from this to who they are today, but I'm enhjoying every minute!
We had a wonderful party for them a couple of weeks ago. Herewith a few pics for the day.
I was in charge of distracting the wee monsters while everyone else were preparing the room. This naturally meant that they took turns riding on the back of my wheelchair while I chased the other one around the room(apparently with a maniacal expression on my face) Photo by David
I had no idea that Morgan Monkey Girl rode this way until I saw the picture Photo by David
When that started getting a little old, we gave them their present: two pairs of wings. And then I chased them around the room while they pretended to fly. Throughout the day, several adults also tried out the wings. Okay, so almost everybody tried the wings and wished that taking in adult sizes.

Liam was sure that his were owl's wings and spend a significant amount of time communicating in owl, sayin…

I had a plan for this week. I’ve had that plan for about a
year. Because the International Day of People with Disabilities is on December
3 and for the last couple of years, that meant that I go to Variety
Village to take part in the City's
celebration of this day. It's a terrific day that celebrates the achievements
of people with disabilities.There is space for artists with disabilities to
exhibit their work, a lot of networking and awards recognizing the achievements
of people with disabilities. Due to an injury, I had to miss last year's fun,
but was determined to go this year. And then Rob Ford got elected. Which means this year, The
International Day for People with Disabilities will not be celebrated by the Cityof Toronto. Sure, there'll be a
proclamation and the Access Award will be given out during the City’s
celebration of Human Rights Day, held in the Council Chamber. Which I thought
wasn’t accessible, but maybe they've changed that in the last year or s…